Positive Blood Test, Endoscopy Next Week

[Katrala]

I've been having some stomach problems since last August (2010.) Doctor has suspected Crohn's and IBS. Since August I've lost almost 70 pounds and have had terrible bloating, cramps, sometime diarrhea, and gas. My hair falls out and I can't remember simple things much more often than I ever used to. The last month or two I've found myself more and more down. I'm so exhausted I'm in bed by 8:30 almost every night.

I had a colonoscopy back in December (2010) and they ruled out Crohn's and then my GI's nurse practitioner diagnosed IBS at my follow-up and ordered a blood test for Celiac.

I never heard back from the blood test so I assumed all was normal. I went back to my GI this past week (April 2011) and I mentioned that I assumed my test was negative since I was never called. He glanced at his computer and said, "Actually, it was positive."

I wish I had asked for a copy of the test results - I remember there were 3 different tests, one of which was supposed to be between 5-10 for normal I had, like, 43. He said 2 out of the 3 were "positive," but I'm not sure what they were, exactly.

He said he thought it was "Celiac Sprue" and told me I'd need to buy a book. He's going to confirm with an endoscopy next Wednesday and said not to change anything about my diet before then.

I'm so relieved to have an answer (well, feel like I'm close to an answer) that I'm not even upset. I've read, though, that it's possible to have a positive blood test and a negative biopsy, so I'm a little worried this won't be the answer and I'll have to keep searching.

Should I do anything before Wednesday? Should I expect to know something immediately from the doctor?

[GlutenFreeManna]

The blood tests are very, very rarely false positive. With 2 positive blood test you most definitely have Celiac Disease. Your dr was very negligent to not call you with the blood test results and to just tell you to "buy a book". If you want the endoscopy to have the best chance at being positive do NOT cut gluten out of your diet until after it is done. Once it is done you should go gltuen free--no need to wait for the results. Many here have been diagnosed just by the blood test or just by genes and positve response to the diet. A positive endoscopy is another piece fo the puzzle but it is not required for diagnosis. Also be sure to ask questions prior to the procedure--a good dr will take multiple samples from multiple areas of your intestines, not just one sample. If you can get the lab report from your first endoscopy when they checked for chrones you might be able to save yourself the trouble of havign to do another endoscopy. If the first one says you had signs of villi blunting or any similar wording then you MIGHT be able to get your bonehead dr to diagnose you without another costly procedure.

[ravenwoodglass]

Welcome to the board. The day they do the endo you should go strictly gluten free. The procedure is not bad, you won't have to do the 'clean out' that you had to do with the colonoscopy. Do make sure you have someone drive you to the procedure and they will need to stay while it is done to drive you home. You won't be able to drive for the rest of the day and likely will feel like napping when you get home. The choice to have it done or not is yours to make. With postive blood work you are diagnosed. While you are waiting to get that done read as much as you can here and ask any questions you need to. You can also get to work on deglutening your kitchen so you are ready to go after the endo. You will need a new toaster for just your gluten free breads, if you have nonstick cookware that is scratched that should be replaced as well as any wooden utensils and your strainer for pasta. You will also need new condiments and they should not be shared with gluten eaters. Double dipping a knife in butter, jelly etc will contaminate your food.

[Katrala]

Thank you for the replies.

So I don't have to get an endoscopy?

I bought one book, "first year with celiac" (or something like that) and someone else loaned me some gluten-free info and books.

I hate being put to sleep. I felt like I couldn't breathe right before they put me under for the colonoscopy. I know it's only a few minutes but it still scares me.

What are the benefits of having the endoscopy?

[ravenwoodglass]

Thank you for the replies.

So I don't have to get an endoscopy?

I bought one book, "first year with celiac" (or something like that) and someone else loaned me some gluten-free info and books.

I hate being put to sleep. I felt like I couldn't breathe right before they put me under for the colonoscopy. I know it's only a few minutes but it still scares me.

What are the benefits of having the endoscopy?

The choice to have the endo is yours to make. While some like to have one done to see if anything else is going on you do have the option of having one done later if you have issues that don't resolve. There are times when other things like ulcers and signs of reflux are due to the celiac and do resolve on their own after we have been gluten free. Some like to have the endo so they have a base line for other endos down the road. Some doctors will not give an official celiac diagnosis without one but it is becoming a bit more common for doctors to diagnose based on positive blood work and response to the diet. We also need to keep in mind that there are false negatives with endos so regardless of the results of the endoscopy you do still need the diet if your bloodwork is positive.

[Katrala]

So pretty much either way I need the diet?

[ravenwoodglass]

So pretty much either way I need the diet?

Yes. If your having the endo wait till that is done. If your not just start the diet.

[GlutenFreeManna]

So pretty much either way I need the diet?

Yes. Positive blood work indicates celiac. You will need to go 100% gluten free no matter what. Just wait until after the endo to go gluten free.

[Roda]

Well that just sucks that the doctor's office dropped the ball on that one. You've had four months extra to be miserable. Now that you know def go gluten free after you are done with testing.

[Katrala]

I figure the next few days will be spent de-glutenizing the kitchen and such.

Does a checklist of sorts exist for making sure you have thought of everything?

I made muffins this morning and as the kids were dipping the butter to put on the muffin and putting the knife right back in the butter, I realized that I wouldn't be able to keep doing stuff like that.

Also - do many people get their kids tested after they've been diagnosed?

[Roda]

It's a good idea to get your kids screened. I had both of mine screened after my diagnosis. Both kids were negative on blood work. My oldest son has been blood tested twice since then and has continuted to have negative blood work. FF to Nov. 2010 when the youngest son was rescreened and he had a positive IgA ttg. He went gluten free after the results. Oldest son I'm suspecting has false negative blood work or is gluten intolerent. Allergist feels he needs to be gluten free along with his brother and me. I will be doing a trial of gluten free with the oldest soon..